D SUMMARY OF ANALYSIS OF VARIANCE FOR MODERATELY RETARDED
SUBJECTS AFTER THREE YEARS IN ICF/MR . . . . . .

E SUMMARY OF ANALYSIS OF VARIANCE FOR SEVERELY RETARDED
SUBJECTS AFTER FOUR YEARS IN ICF/MR. . . . . . .

F SUMMARY OF ANALYSIS OF VARIANCE FOR PROFOUNDLY RETARDED
SUBJECTS AFTER FOUR YEARS IN ICF/MR. . . . . ....

Page

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G SUMMARY OF ANALYSIS OF VARIANCE FOR PROFOUNDLY RETARDED
HANDICAPPED ICF/MR SUBJECTS AFTER FOUR YEARS IN ICF/MR. . 142

H ADAPTIVE LEVEL AND ITS RELATIONSHIP TO CHRONOLOGICAL
AGE AND LEVEL OF RETARDATION (IQ) FOR ALL CONTROL
SUBJECTS AND FOR SUBJECTS WHO LIVED IN ICF/MR AT
LEAST ONE YEAR . . . . . . . . . 143

I ADAPTIVE LEVEL AND ITS RELATIONSHIP TO AGE AT INSTI-
TUTIONALIZATION, YEARS LIVED IN NON-ICF/MR, AND AGE
AT ENTRY TO ICF/MR FOR ALL ICF/MR SUBJECTS. . . . ... 144

REFERENCES . . . . . . . ... ... . . . 145

BIOGRAPHICAL SKETCH. . . . . . . . . ... . . 153

Abstract of Dissertation Presented to the Graduate School of
the University of Florida in Partial Fulfillment of the Requirements
for the Degree of Doctor of Philosophy

EFFECTS OF PLACEMENT IN AN INTERMEDIATE CARE
FACILITY FOR THE MENTALLY RETARDED

by

Susan Angenendt Bedinger

December, 1985

Chairman: Donald L. Avila
Major Department: Foundations of Education

The purpose of this study was to examine the effects of place-

ment in a federally funded Intermediate Care Facility for the Mentally

Retarded (ICF/MR) training program as opposed to placement in a more

traditional care unit at the same institution. Conflicting results

in the literature indicated a need for research on the effects of the

program.

The progress of 158 moderately, severely, and profoundly retarded

subjects living in a state institution was compared with that of 279

control subjects. Profoundly retarded ICF/MR subjects were further

divided by number of major physical handicaps.

Social Age, as measured by the Vineland Social Maturity Scale,

was found to increase significantly for all ICF/MR subjects but for

none of the non-ICF/MR conditions. Progress for moderately and

severely retarded non-ICF/MR subjects was not significant during the

year following an institutional reorganization which attempted to

provide equal services to both ICF/MR and non-ICF/MR units. Implica-

tions of the significant progress made by profoundly retarded control

subjects during this year were questionable. Age at institutionaliza-

tion, number of years lived in the institution before placement into

an ICF/MR unit, and length of time spent in ICF/MR were all found to

have no relation to progress.

Twelve case studies examined individual response to placement in

ICF/MR and some possible reasons for progress or lack thereof.

Subjects in the ICF/MR program made significant gains in Social

Age as opposed to those living in more traditional care units at the

same institution even after improvement of services in the traditional

units. No demographic or diagnostic characteristics were found to be

predictive of success in the ICF/MR program with the possible exception

of the presence of psychosis in addition to a diagnosis of mental

retardation.

CHAPTER I
INTRODUCTION

Mental retardation is an age-old tragedy and our reactions to

it and treatment (or lack thereof) have varied greatly throughout the

years. The birth of a retarded child has been viewed alternately as

a punishment from God and as a blessing, and response to the child has

ranged from total neglect and abuse to total acceptance and lack of

any demands or expectations. Current work has established the ability

of retarded persons to learn and develop and now concentrates on

finding the best methods for promoting developmental growth.

Background of the Study

More than six million people in the United States have some

degree of mental retardation. This population ranges from those

known as "six-hour retardates," mildly retarded persons who do poorly

in school but have adequate adaptive and social skills for daily

functioning (Anderson, 1981), to the most profoundly retarded and

handicapped individuals who are passive captives of their environment.

The more severely retarded persons are found mainly in institutional

settings (Eyman & Borthwick, 1980).

For many years, the profoundly retarded were thought to be un-

trainable and so received only minimal custodial attention (Stainback

& Stainback, 1983). Recent interest and legislation have focused on

the adaptive needs and potential of developmentally delayed persons (Turnbull

&Turnbull,1978). Enacting legislation and guaranteeing the rights of

the mentally retarded are only beginning steps, however, and effective

implementation strategies have yet to be definitively outlined. Several

directions are now being explored including intensive training,

improvement of living conditions,and deinstitutionalization of resi-

dents into the community (Gibson & Fields, 1983; Landesman-Dwyer, 1981).

These issues will be discussed in greater detail in Chapter II but the

point for now is that awareness of the historical dehumanization of

the mentally retarded has reached the public forum and options for

correcting past injustices are being explored.

Sunland Center in Gainesville, Florida,I is a state institution

for the mentally retarded. Originally established in 1922 as the

"Florida Farm Colony for Epileptic and Feeble-Minded," it is today an

attractive collection of brick cottages, support departments, and

hospital. The majority of cottages are unlocked so that residents

can go inside and out at will and those who are capable travel around

the campus by themselves when going to school, work, bank, or canteen.

Prevocational training departments in each unit prepare residents for

paid work positions in the institution's sheltered work shops.

There were initially six widely dispersed Sunland Centers located
throughout Florida. Two changed their names and two closed due to
physical plant inadequacies so that there are now only two "Sunland
Centers" in Florida. All references to Sunland in this study refer
to the institution located in Gainesville.

The majority of clients presently residing at Sunland fall into

the severe and profound levels of retardation since most moderately

and mildly retarded residents have been moved to community placements.

A significant number of the residents remaining in the institution have

some degree of visual, auditory, and/or motor deficit.

Statement of the Problem

Despite substantial individual differences within the mentally

retarded population, there has been a marked tendency in the literature

behavioral variability as defined by motivation on a circular maze test(Balla,

Butterfield, &Zigler, 1974), are interesting but not readily general-

izable to treatment. Additionally, most studies have used a cross-

sectional rather than longitudinal design so that effects have not

been examined over time (Lemanowicz et al., 1980).

The present study examined six years of longitudinal data,

looked at several variables such as number of physical handicaps,

age at institutionalization, and time spent in traditional custodial

care before placement in an intensive training program, and made

specific treatment recommendations.

Intermediate Care Facility for the Mentally Retarded

A federally funded program, Intermediate Care Facility for the

Mentally Retarded (ICF/MR), has been implemented nationwide in order

to provide optimum living and training conditions for mentally retarded

persons. Funded under Title XIX of the Social Security Act (Medicaid),

ICF/MR units function under strict guidelines and accountability

standards. The program is designed to provide a stimulating training

environment for large numbers of institutionalized residents and to

prepare them for placement in the community. The ICF/MR program units

provide intensive and individualized training to residents in all areas

of need including self-care and daily living, academic, social, motor,

speech, and job-related skills, as well as any medical, occupational,

or physical therapy services. The following conditions are necessary

to qualify for ICF/MR placement:

any person who has reached his 18th birthday and has an IQ
of 49 or less or who has an IQ of 50-69 with an additional
disability such as blindness, deafness, etc. Any person
under 18 years of age with an IQ of 59 or less or who has
an IQ of 60-69 with an additional disability. These persons
must have an income no greater than $505.00 per month and
total assets no greater than $1,500. (State of Florida
pamphlet ICF/MR? Department of Dealth and Rehabilitative
Services [no date or publication number given])

Sunland ICF/MR

Twenty-eight of the fifty cottages at Sunland Center are licensed

ICF/MR residences. The first unit (Facility I) of 120 residents re-

ceived its ICF/MR license in 1977 and new units were added as funds

became available to meet physical plant renovation requirements.

Facility II came on line in 1979; Facility III in 1980; Facility IV

in 1981; and one-half of Facility V in 1982. There are no plans at

present for further expansion of the program at Sunland.

The ICF/MR program is supported by federal (56%) and state (44%)

funds. The maximum payment per client per month is $1,064.00, depending

on the particular needs of the client. Guidelines and accountability

are strict. For example, each client must have a minimum of eighty

square feet of living area if in a private room, or sixty square feet

if living in a room of two to four persons. Families are encouraged

to visit at any time and a resident is permitted to spend up to thirty

nights at home per year. Medical care is provided, and each client

must have a medical, pharmaceutical, and dietary review every sixty

days. A direct care staff to client ratio of one to two is required

for ambulatory and one to one for non-ambulatory residents. Addi-

tionally, a cottage manager and training staff are assigned to each

cottage. Clients may not have more than three consecutive hours of

unstructured time any time of the day, any day of the week. Standards

are monitored through biannual surveys conducted by the Office of

Licensure and Certification (OLC) and Medicaid, as well as by an

in-house Quality Assurance Team in addition to monthly facility self-

monitoring.

Each Sunland unit of 120 clients is supported by a profes-

sional staff of two psychologists, social workers, speech therapists,

occupational therapists, vocational trainers, and one dietician. All

clients are evaluated yearly and their progress over the past year

assessed. Training goals for each client's coming year are developed

at his or her annual habilitation plan meeting. Progress in all train-

ing programs is reviewed at least quarterly and often monthly by an

Interdisciplinary Team (IDT) which consists of cottage staff, all

therapists who provide services to each client, and the social worker,

nurse, and program coordinator (Qualified Mental Retardation Profes-

sional--QMRP).

Prior to November 1982 Sunland non-ICF/MR cottages had a high

staff-client ratio and provided traditional custodial care. Two or

three direct care staff each shift performed all housekeeping and

caretaking activities for one cottage of twenty to thirty residents,

and one or two training aides were supervised by a behavioral program

specialist working out of a central programming department. In

November of 1982 the Center underwent a unitization process during

which all therapy departments were dissolved and placed under the

authority of the head administrator in each unit. All facilities were

assigned the same number of direct care, training, and therapy staff

except that non-ICF/MR cottages received no housekeepers. All

facilities were then charged with meeting ICF/MR standards so that

all clients at Sunland would receive identical training and care

whether they lived in ICF/MR or in non-ICF/MR units.

In practice, however, this attractive goal has not been met and

there remains a training/care differential between the two kinds of

living units. Non-ICF/MR cottages remain more crowded than their

ICF/MR counterparts and ICF/MR staff vacancies at times take priority

because licensing and federal funding are jeopardized if full services

level; such children usually can master basic academic skills while adults

at this level may maintain themselves independently or semi-independently

in the community; they are fixated at Piaget's concrete operations stage.

2. Moderate: IQ scores range 3-4 standard deviations below the norm

(36-51 on Stanford-Binet and 40-54 on Wechsler); many trainable

individuals function at this level; such persons usually can learn

self-help, communication, social and simple occupational skills but

only limited academic or vocational skills; they are fixated at Piaget's

pre-operational intuitive stage.

3. Severe: IQ scores range 4-5 standard deviations below the norm

(20-35 on Stanford-Binet and 25-39 on Wechsler); such persons require

continuing and close supervision but may perform self-help and simple

work tasks under supervision, sometimes called dependent retarded; they

are fixated at Piaget's (upper level) sensorimotor stage.

4. Profound: IQ scores range more than 5 standard deviations below

the norm (19 and below on Stanford-Binet and 24 and below on Wechsler);

such persons require continuing and close supervision but some may be

able to perform simple self-help tasks; profoundly retarded persons

often have other handicaps and require total life support systems for

maintenance; they are fixated at Piaget's (lower level) sensorimotor

stage.

History

Thirteenth century England distinguished between the classes of

"born fool" and "lunatic" (Anderson, 1981). In the nineteenth century,

these same two classes of retarded were known as "idiots" and

"imbeciles." Probably the first written definition of mental

retardation is credited to Esquirol in 1845:

idiocy . a condition in which the intellectual faculties
are never manifested, or have never been developed suffi-
ciently to enable the idiot to acquire such amount of
knowledge as persons of his own age and placed in similar
circumstances with himself are capable of receiving.
(Anderson, 1981, p. 716)

While an admirable attempt, this definition classified people as

retarded if they had any one of a wide range of handicaps including

epilepsy, emotional disturbances, and deafness.

The Idiots Act of 1886 (Anderson, 1981) discriminated between

institutionalized "idiots" and "imbeciles." Labels such as Idiot,

Imbecile, and Moron persisted into the 1960's. Value labels such as

these may have contributed to the poor care generally available as well

as being a product of the philosophy that allowed such abysmal care.

In the nineteenth century, Itard worked with the "wild boy of Aveyron"

and was able to improve his condition somewhat, in spite of the pre-

vailing wisdom that idiocy was an incurable and chronic disease. In

1905 Binet and Simon developed the first standardized method of con-

sistent classification so that educable retarded children could

receive special training. Community-based services came into existence

in the mid-1950's and John F. Kennedy established the President's

Committee on Mental Retardation in the early 1960's. Section 504 of

the Rehabilitation-Act of 1973 and P.L. 94-142, the Education of All

Handicapped Children Act of 1975, mandate a free and appropriate educa-

tion in the least restrictive program for all handicapped children

(Turnbull & Turnbull, 1978).

Demographic Data Collection

Numerous surveys have collected information on the incidence and

characteristics of the retarded population in this country. Methodology

has been varied and the data obtained have often been unreliable,

limiting the information base available for policy decisions.

The first demographic data gathered on the population of mentally

retarded persons in the United States were drawn from the census of

1850 (Lakin et al., 1982). Efforts centered on counting the number of

"idiotic" and "feeble-minded" persons, as well as other "defective,

dependent, and delinquent classes." Census methodology was poor at

best, but it did signal some interest on the part of the federal govern-

ment in an important segment of its population. Initial surveys

attempted to count persons in the community as well as in institutions

but the data obtained were so unreliable that surveys after 1902 were

restricted to institutions. From 1926 to 1932, authorization was

made for data collection on "inmates in penal institutions and of

institutions for the care of the mentally diseased and of feeble-minded

and epileptics." Various government agencies have been assigned the

task over the years and the labels have changed from "moron," "imbecile,"

and "idiot" to "mild," "moderate," and "severe-profound." Data col-

lection continues and the interest of the federal government in the

developmentally delayed population has waxed and waned depending on

the political bent of the administration in power and the state of

the national economy.

Normalization

Emphasis on deinstitutionalization and normalization as well as

an overall decrease in numbers of school age children has resulted

in greatly diminishing numbers of people living in institutions for

the mentally retarded (Lakin et al., 1982). Normalization philosophy

was first formally addressed in the 1959 Danish Mental Retardation

Act (MacEachron, 1983) which sought "to create an existence for the

mentally retarded as close to normal living conditions as possible"

(p. 2). The United States has adopted this approach and made it the

primary goal of the Joint Commission on Accreditation of Hospitals

(JCAH): "The facility shall accept and implement the principle of

normalization, defined as the use of means that are as culturally

normative as possible to elicit and maintain behavior that is as cul-

turally normative as possible, taking into account local and subcul-

tural differences" (p. 3). As MacEachron points out, the expectation

of the Americans was that normalized behavior would be a direct result

of placing mentally retarded persons into a normalized environment.

Exactly what constitutes a normalized environment has not been

determined, however, and Lakin et al. (1982) report that the number

of readmissions to public residential facilities has exceeded the

number of first admissions since 1978.

Care of the mentally retarded has become big business. The cost

of maintaining a public institution has risen dramatically since 1970.

this type of "care." He and his crew strapped on cameras and ran through

the wards at Willowbrook State School in New York (now known as the

Staten Island Developmental Center). The resulting film showed what was

truly a snakepit: "conditions more fitting for a concentration camp than

a hospital. Images of helpless children, ostensibly in New York's

benevolent care, but in fact completely neglected, wallowing in filth

and ravaged by one of any number of diseases" (Jordan, 1985, p. 70).

Speaking from personal experience, there is an unmistakable and un-

forgettable stench that one finds in such a ward, a combination of

drool, urine, and feces; and a sound of misery and total isolation.

Ward attendants in such places are often caring people but usually

underpaid, overworked, and therefore relatively powerless to effect

any changes in such an environment.

Duly shocked by such living conditions, public opinion swung to

the extreme in the 1960's (Baroff, 1980) and cried for "normalization,"

declaring that all institutions are terrible and inhumane places and

that the only good placement is in the community in a normalized

environment, where "mentally retarded persons should share the cul-

tural patterns and have the advantages offered to others" (Tjosvold &

Tjosvold, 1983, p. 28). The case of the Pennsylvania Association for

Retarded Children (PARC v. Commonwealth of Pennsylvania, 1971) estab-

lished the rights of mentally retarded children to equal educational

opportunity:

It is the Commonwealth's obligation to place each men-
tally retarded child in a free, public program of education
and training appropriate to the child's capacity . .
placement in a regular public school class is preferable
to placement in . any other type of program of educa-
tion and training. (Meyen, 1978, p. 89)

The battle between pro- and anti-institutionalization proponents

rages, a battle with client welfare, parental emotions, and cost as

the elements. The "Community and Family Living Amendments of 1983"

would "phase out, over a 10 year period, all residential facilities

for the mentally retarded (institutions and other ICF/MR nursing

homes) of 25 residents or more throughout . the United States.

Medicaid (Title 19) funding and residents would be transferred to

community facilities of 15 residents or less" (Sharp & Polson, 1984,

p. 1). This legislation was initiated in 1982 by the National Associa-

tion for Retarded Citizens' resolution that "all people regardless of

the severity of their disabilities, are entitled to community living"

(Sharp & Polson, 1984, p. 2). Such strong anti-institution senti-

ment is not uncommon, as the following piece by Blatt (1981) illustrates:

In the special world of institutions,
One learns the rules only by breaking them,
And is happy if he's not depressed,
With full control when not unhinged,
For he's alive just because he's not dead,
But dead while he lives. (p. 99)

Florida succeeded in reducing the population in its six state

retardation institutions by 47% from 1970 to 1981, with a resultant

census of 3,356 residents (AFSCME, 1984). Deinstitutionalization has

not succeeded as well as it might, however, and client distress, abuse,

and death have resulted. Some clients have been unwittingly moved to

residences of questionable quality. One nursing home chain is under

investigation in at least five states and allegedly has ties with

organized crime. Some homes have been closed because of abuse to

the residents, such as the Jesus Loves You Home for Boys (AFSCME, 1984).

Other residences have been established with the best of intentions but

staffed by people with little or no retardation experience and un-

equipped to address specialized health and behavioral needs. Community

that would develop their capacities to the fullest extent possible and

no right to community living arrangements" and that they are entitled

only to "freedom from unreasonable bodily restraints and to such

training as is required to reduce the need for bodily restraints and

promote physical safety" ("Administration Argues," 1984, p. 5-A).

Empirical evidence is necessary to support policy decisions by

those in positions of authority but current research is often

contradictory. Longitudinal data and objective measures of growth

can provide the necessary information. Several useful instruments

exist to measure environmental and individual characteristics objec-

tively including the Program Analysis of Service Systems (PASS), the

AAMD Adaptive Behavior Scale (ABS), and the 1984 revision of the VSMS.

Conroy (1979) has outlined theoretical dimensions of quality and

operational measures of quantity which may serve as useful research

guidelines. Criteria such as "wariness" are interesting but vague, do

not allow comparisons between studies and institutions, and do not

provide positive guidelines for future placement of and delivery of

services to residents. Personality and mental health characteristics

are important in predicting an individual client's response to training

strategies but must be objectively defined and replicable when used as

data bases for research.

The poor response of some mentally retarded psychotic residents

to ICF/MR placement indicates a need for research in this area. Effec-

tive placement for persons suffering from both mental retardation and

mental illness remains to be established. Is their behavior more

functional in an environment geared toward treating the mentally re-

tarded or the mentally ill? Effective strategies for working with

dually diagnosed persons who are essentially unresponsive to con-

tingencies are badly needed.

Social Age gain for non-ICF/MR Sunland clients during the year

following unitization was not significant. Further follow-up is

needed to determine whether the lack of growth under presumed improved

living and training conditions was temporary and possibly due to

initial adjustment factors, either client or staff, or if the inter-

vention will indeed be effective. If non-ICF/MR subjects' growth

begins to equal that of their ICF/MR counterparts, the argument may be

presented that the expense of ICF/MR is not necessary in order to pro-

vide a healthy environment. It must be remembered, however, that

non-ICF/MR units at Sunland operate under close to ICF/MR standards

and as such are more expensive than traditional custodial units.

Conclusion

Moderately, severely, and profoundly retarded individuals respond

well to intensive training and structure, progressing both in adaptive

skills and appropriate behaviors. The Intermediate Care Facility for

the Mentally Retarded program at Sunland Center, Gainesville, provides

an environment that is capable of producing such growth. Neither

traditional care practices nor improved care after unitization pro-

duced significant progress.

The ICF/MR program is intensive and expensive but is designed to

be an intermediate program step between institutional and community

placement rather than a permanent living arrangement. Instead of con-

tinuing the institutionalization-deinstitutionalization battle,

emphasis should be placed on locating the most appropriate placement

for each individual resident. Attention must be paid to diminishing

transition shock and improving client adjustment to the community (and

community adjustment to the client) so that community placements will

be successful and return to the institution unnecessary. In conjunction

with improved adjustment skills, an adequate number and quality of

community residences must be established so that ICF/MR clients who

have developed appropriate skills can be moved out of the institution.

Such development of resources will utilize the ICF/MR program according

to its goals, will depopulate the institution and reduce crowded

conditions on remaining cottages, and should lower the cost of running

the institution as the census is lowered and fewer support services are

required. In this way, those residents who have adequate functional

skills and behavior for community living will profit from a non-

institutional environment while those residents who continue to require

more intensive treatment for whatever reason, medical, functional, or

behavioral, will remain in the institution.

"Many of the problems that we're called in to treat are the re-

sult of living in pathogenic environments" (Risley, 1982, p. 3). Fac-

tors relevant to client development in an institution include the

amount of day programming, degree of individualized treatment, and

number of (psychotropic) medications prescribed (Conroy & Bradley,

1981). Given the results of the present study, it may be said that

the ICF/MR program at Sunland has greatly modified the traditional

institutional setting to provide a healthy environment and one which

meets Conroy and Bradley's criteria. The "snake pit" has been tamed.

APPENDIX A
CLARIFICATIONS ON VINELAND SOCIAL MATURITY
SCALE SCORING

Item Number Clarification

4 What behaviors are included in "reaches for familiar
Soc persons"?

If the client differentiates family from strangers and/or
reacts differently to different staff members, score +;
if not, score -. "Reacting" means initiating a response.

7 Does "occupies self unattended" include self-stimula-
Occ tion?

If the self-stimulation is not harmful, score +; if it
requires intervention, score +.

10 Which sounds are included in "imitates sounds"? Are self-
Comm stimulatory sounds, noises, and crying included?

Only sounds with speech-like inflections should be
scored +.

14 What behaviors indicate "demands personal attention"?
Soc
A primary criterion is that the client must initiate the
behavior. In the case of a severely handicapped client,
following staff member with eyes might be sufficient.

18 How is "walks about room unattended" scored for non-
Loc ambulatory clients?

It should be scored + for a client who is wheelchair
mobile; any level of mobility below this is scored -.

22 How liberally is "transfers objects" interpreted?
Occ
This cannot be hand-to-hand transfer of objects in a
manipulative manner only; the behavior must indicate
purposeful placement of an object. The placement of a
piece in the form board is scored +.

26 "Gives up baby carriage." How do we score this for a
SHG wheel chair client?

If the client is wheel chair mobile, score +; if he is
partially mobile, score +.

30 Is food on the floor an "edible substance"?
SHE
Score + if client does not eat trash, whether or not he
eats food off floor.

33 How do we score "unwraps candy" if client is never given
SHE wrapped candy?

If there is really no opportunity, score NO. If client
peels a banana or opens a bag of chips, score +.

34 "Talks in short sentences."
Comm
Speech must be meaningful and must combine at least two
words to be scored +; size of vocabulary is of less
importance.
If speech occurs only occasionally and/or only in response
to specific persons, score +.

35 "Asks to go to toilet."
SHG
This should be scored strictly according to the VSMS
manual.

36 Does "initiates own play activities" include watching and
Occ reacting to TV?
Does it include playing with string or non-toys?
Does it include self-stimulation?

Score + for both active watching of TV and playing with
non-toys.
Score for self-stimulation.

38 "Eats with fork."
SHE
This item will have to be scored NO for clients on many
cottages.

39 Does "gets drink unassisted" include use of water fountain?
SHE Would it include drinking from the commode?

Score unassisted use of water fountain +; score drinking
from commode -.

41 Many of these "simple hazards" do not occur in the Sunland
SHG environment. Would "hazards" include an angry client?

Group Reached no firm conclusions, but felt (1) this did
not include avoiding another client and (2) staying out of
the street is important, but not definitive.

43 How liberally do we score "cuts with scissors"?
Occ
If possible, we should give the client a trial with
scissors and/or get a fairly detailed report. On this
item use NO liberally.

45 Should client receive credit for "walks downstairs one
Loc step per tread" without assistance if he uses the stair
railing?

In scoring this item, do not count use of railing as
assistance.
If client is handicapped and can get downstairs alone in
any manner, allow I credit.

46 Must the client know and observe the rules of the game in
Soc order to receive credit for "plays cooperatively at
kindergarten level"?

This item does not include knowing and/or observing rules.
The item is scored + if the game is supervised by an adult.
The item is scored + if the client plays with one other
person in an organized manner.

49 "Performs for others."
Soc
To be scored +, the performance must be either carried out
by request and/or be clearly intended for the entertainment
of others.

50 "Washes hands unaided."
SHD
This item may be scored + if the client requires verbal
reminders and/or cues, but should be scored if he re-
quires physical assistance.
The item does not require that the client adjust the water
temperature.

51 "Cares for self at toilet."
SHG
If the client cares for himself completely in toileting
except for the use of tissue and tissue is not available,
score this item +.

52 "Washes face unassisted."

As in item 50, the item should be scored + if the client
requires verbal reminders and/or cues, but should be
scored if physical assistance is required.

53 "Goes about neighborhood unattended."
Loc
If the client goes to any off-cottage activity unattended,
this item is scored +; if he must be observed all the
way, score +.

54 "Dresses self except tying."
SHD
Client should receive no credit for this item if he dresses
with slip-on type clothing only; to receive credit, his
dressing skills must include fasteners.
NOTE: If item 47 is -, this item must be -.

56 "Plays competitive exercise games."
Soc
Examples of activities at Sunland which should be scored
+ are Special Olympics, kick ball games, and throwing a
basketball with other clients.

57 "Uses skates, sled, wagon."
Occ
If item 53 is scored + and the client rides a bicycle or
tricycle around campus, score this item +.

60 "Is trusted with money."
Self-
Dir Score this item + if the client can be trusted to take
his own money or someone else's money and buy items at
the canteen.

61 "Goes to school unattended."
Loc
This item should be scored + if item 63 is + and the
client goes from one place on campus to another place on
campus three or more blocks distant unattended and
unwatched.
All clients acting as messengers around campus should
receive + score.

62 "Uses table knife for spreading."
SHE
If client does not have access to a knife and uses a spoon
for this purpose, score +.

64 "Bathes self assisted."
SHD
"Assistance" may be verbal cues, setting water tempera-
ture, shampooing.
To score + client must soap and rinse all body parts with
no physical assistance.

65 "Goes to bed unassisted."
SHD
In the Sunland environment, this is scored + if client gets
into his own night clothes without assistance and goes to
his own bed.

67 "Uses table knife for cutting."
SHE
This is to be scored + only if item 62 is +.

68 "Disavows literal Santa Calus."
Soc
If possible, ask the client if Santa Claus is a real per-
son and score accordingly.

69 "Participates in pre-adolescent play."
Soc
To score + on this item, the activity (1) must be client
initiated and/or be carried on without adult leadership,
(2) must involve purposeful activity, and (3) must involve
physical activity.

71 "Uses tools or utensils."
Occ
Occ The "tools" may include broom and mop.
The item is scored + only if the client habitually uses
more than one tool.
Client should not receive credit for Sheltered Workshop
activities if he does not use tools in other settings.

72 "Does routine household tasks."
Occ
This item is scored + even if the client requires some
verbal prompts.
If client performs one cottage chore only, allow I credit.

APPENDIX B
CASE STUDIES

CASE STUDY #1

Demography

AB is a twenty-five year old black male who has been diagnosed

autistic. His mental retardation is related to premature delivery

and his IQ, as obtained on the Stanford-Binet Form LM, is 13 (Profound

level of functioning). He has no physical handicaps other than early

cataracts, which do not seem to interfere with his daily functioning.

He has lived at Sunland since the age of eight and was moved to his

present ICF/MR cottage at the age of twenty-one.

AB engages in high levels of self-stimulatory physical activity

and requires a high calorie diet just to maintain his weight. He is

a somewhat picky eater and eats in "patterns," e.g., will eat around

and around the edge of his mashed potatoes until they are consumed.

He ruminates after meals (regurgitates and re-eats his food) but the

duration of each incident is short and thus no dental, medical, or

dietary problems have resulted.

AB is very muscular and fit, undoubtedly due to frequent and

vigorous self-stimulatory rocking and bouncing. He is extremely well

coordinated and, when upset, will sometimes run "full speed" at a wall,

turn 1800 at the last moment and then hit the wall very solidly with

his back. Other autistic behaviors he exhibits include twirling a stick

in front of his eyes, smelling objects, and stretching the bottom

front of his t-shirt so that it will billow in the air as he moves it

up and down. AB has a short attention span when engaged in anything

except self-stimulatory behavior, and does not initiate contact with

others.

Behavior

AB engages in self-stimulation during most of his unscheduled

time but has also exhibited some more serious behaviors. He previously

urinated and masturbated outdoors but now performs these activities

in more appropriate locations. In February 1983 he began to masturbate

excessively (from 1 1/2 to 5 hours per night). This behavior continued

during the day as well and posed a threat to his well being since he

was sleeping very little. He was referred to psychiatric clinic and

Tofranil was prescribed. The intervention was successful and there

have been no further reports of the behavior occurring excessively.

AB once had frequent, sometimes daily, tantrums but his behavior

has shown great improvement since he and his cottage mates have been

able to eat in their own dining room rather than in the central dining

hall. The central dining hall is noisy and chaotic and AB often became

very agitated, jumped up and down, and bit himself. These behaviors

stopped once he was able to eat in a calmer atmosphere and no longer

had to wait in line to obtain his food. Presently he becomes upset

only about twice per month; some tantrums are attributable to displeasure

with events and others occur for no apparent reason.

Mellaril was prescribed in 1969 to help control AB's behavior

but was discontinued in 1982 when he was diagnosed autistic. The

consulting psychiatrist prescribed Haldol (1 mg twice daily) based on

work which claimed some success treating autistic symptoms using small